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Monday, April 27, 2015

4+ Years Post-Stroke/Aphasia and His Brain is Waking Up

I have really been amazed at how much Bob has grown, cognitively, these past few months. It seems (and other people have remarked) that suddenly Bob is "more with it". I mean, he appears to understand more of what's going on around him, AND he is a lot more interested in what's going on around him, AND he is suddenly making A LOT more sense when he speaks. It's like his brain is finally "waking up".

I credit this improvement to all the hubbub/excitement over the move, all the commotion going on with carpenters/plumbers/electricians/etc. in the house, and also, my attempts to keep him in the loop, so to speak, on the renovations and the decision-making involved in that process. For example, I took him with me to pick out kitchen cabinets and ceiling fans (big mistake, the latter, as Bob pointed to/wanted the MOST EXPENSIVE one they had at that store and would not settle for less!) Of course, a lot of people thought I was nuts to include Bob in those decisions (especially the contractor) but I really wanted Bob to be part of the process. It is, after all, HIS new home, too.

Among other things, Bob is suddenly interested in his radio again. Pre-stroke, Bob had purchased a rather expensive (at least I thought) C-Crane radio and loved to play with that thing. Just recently, he surprised me when he requested to listen to TALK radio. This was a habit of his, pre-stroke, when he loved to talk back to talk show hosts during the day and fall asleep listening to the rather eerie late night program, Coast-to-Coast. Post-stroke, he has only wanted to listen to "rock and roll". Talk radio, it seemed, was all just "noise" to him. Not anymore. He is requesting talk radio turned on at bedtime every night.

One of Bob's doctors, noting Bob's cognitive improvement, said, "Amazing what a change of scenery will do to reactivate the brain!"

And the change of scenery has been good for him. He now wants to get up daily to "tool around". Before, he would spend weeks in bed, only getting out when forced to go to doctors or therapy. Now he likes to drive his power chair around the new house and look at things we've had for years, almost as if he is first discovering them now. He will, for example, point to an antique sign or picture or knickknack and pronounce it "Neat!!" or "Cool!!" as if seeing it for the first time.

He is also more interested in the scenery when we go places. He actually has asked "Where are we going?" (a good sentence, that) when before he pretty much let me cart him around without objection or interest in what was going on.

But along with this leap in cognitive improvement, I hate to say, there is a downside as he has also become downright weirdly anal about some things. Like his bed.

Now his hospital bed is on wheels and, as always, I move it aside to accommodate the wheelchair when we do transfers. But now, when Bob is back in his bed and I roll the bed back into place, he has suddenly developed exceptionally high standards concerning the bed placement.

I mean, imagine this: Bob, leaning over the side rail of his bed, actually squinting one eye down the shiny chrome railing, like a sharpshooter looking down the scope of a rifle, lining it up perfectly with some mysterious landmark. I still haven't figured out what he's looking at (dresser? door knob? knot of wood on the floor?) but that bed railing absolutely must be lined up perfectly with it (whatever it is) --- and if it isn't, I am directed to roll his bed this way and that-a-way until it is lined up.

And then there's the foot of his bed, which must be angled in some mysterious conjunction with the wooden parrots in birdcage next to the TV --

And then there's the bed level. Which has to be perfectly matched to the height of the side table. And I mean perfectly --- if it is a smidge off, I am set to adjusting the bed up and down, headboard and/or footboard up or down until we reach the perfect match.

I tell you, some days, I spend 20 minutes or more adjusting his bed to these picky specifications. Which can be downright maddening to a busy caregiver (who, at a point, just wants to send that bed spinning across the room -- I mean, all right all ready! jeez-us!)

Then there's that C-Crane radio, which he has me turning up and then down, then adjusting tremble, bass, etc. (it's a complicated thing with lots of knobs and buttons) and re-adjusting it, because with his aphasia, he still says "turn it up" when he means "down" or "base" when he means "tremble" until some nights, I swear, I'm getting no sleep (and cranky as all get-out) as I am on "radio patrol".

Finally, one day, I got him out of bed and told him to drive over to the radio and adjust all those stupid knobs/buttons, once and for all. I wasn't sure if he could do it. But he did! And I promised not to touch the dials.

Bob adjusting his radio

So, for better or worse, he is coming out of his shell. His brain is suddenly (finally) "waking up" after more than four years of fog. And I do hope it continues.... (I think)

4 comments:

I think this is amazing! I wish OT personnel everywhere could hear Bob and your story.I mention OT as it's my field, but frankly ALL medical personnel as well as stroke survivors and their families could benefit. What an inspiration!

The old "Improvement stops the 1st year after a stroke" is so very wrong. I've seen it be wrong time and time again. And you guys are certainly proving it wrong.

My husband had a cerebellar stroke in January. He also has MS and Addisons disease. We read your blog, and just wanted to send well wishes to you both as well as say a heartfelt thanks for sharing your story. So, Thanks!😃

Though his "reawakening" is sometimes causing extra work for you, it's amazing and fantastic how he has progressed over the years. You have never given up, never ever considered placing him in a care home from day one, never taken a long respite break (though you should for your own health), and in 99% of your blogs rarely complain about all you have to do each day. Yes, you mention it, talk about it, but you don't complain. Your love for Bob shows in each and every blog. It is that love and difficult, dedicated work that is so much a great part of his "growth".

Diane, I understand the "excitement" of our loved ones awakening. My MIL has recently discovered that she needs to pillows under her legs at nite. AND they need re-adjusting every 2 hours :( She also wants to have a serious talk about going to a home, but falls asleep during mid-sentence or just can't talk at all. It is encouraging that they are making progress, but also takes so much of our precious time. Trudy

Welcome To Our Pink House

About Me

Bob and I were married 09/16/94. He is my soulmate, the love of my life. Bob is an artist and I am a writer.
On 10/20/10, Bob, following his doctor's advice, underwent a carotid endarterectomy. When I left him in ICU that night, he was fine and I thought in good hands. Two hours after my departure, a nurse noted on his chart that Bob's speech was slurred and his right arm was paralyzed. The nurse did not call a doctor. Later that night, the nurse noted that Bob could not move his right arm or leg, still a doctor was not called. The next morning, the nurse noted that he was paralyzed on the right side, a "12" on the Glasgow Coma Scale, disoriented and confused, but no doctor was informed. I arrived at 9:00 a.m. and immediately called for the doctor. He was rushed to surgery. It was 12 hours too late. The CAT scan showed 2/3 of his brain had been damaged. I was told he would not survive. Somehow, he did.
Bob was discharged from the hospital on 12/31/10 and, although the hospital wanted him sent to a nursing home, I brought him home instead. This is the story of our journey since that day. This is also a love story.
(Bob passed away 5/28/15 and I am trying to survive....)